Delivering sad news: how to talk to parents
Every pediatric pratitioner at one time or another has to tell parents bad news about their beloved child. It goes with the territory. But just accepting the ethical responsibility of it doesn't make the doing of it any easier. Since I've worked in the "special needs" area for many years, I've seen and been told about this experience many times. Based on my experience on both sides of the bed (nurse and parent) I can give you a few hints.
First, I'll tell you how not to do it.
Neurologist standing at clinic exam table: Well, Mr. and Mrs. Smith, we have all the test results. Your son unfortunately has Lennox-Gastaut. Have you ever heard of that? Well, it is not very good. It will never get better and will probably get worse. There is no very good treatment at this time.
Please make a follow up appointment with my nurse. Let's see him again in three months.
Now, the better way:
1) Sit down, if possible. Attempt to be on some kind of equal footing with the human beings with whom you are about to discuss something painful. Not only will the parents see you as more compassionate, you will remind yourself of your own essential humanity.
2) Be honest. Truth is always better than prevarication. Never say more than you know. But say what you know.
3) Say, "I don't know" when you, in fact, don't. Don't bluff. This applies to both diagnosis and prognosis.
4) At all times remember that you are there to deliver a diagnosis or prognosis. Your aim is to be truthful in doing so. Your aim is not to destroy hopes or dreams. This may be a side effect of what you have to say, but it is not your goal. It is not why you are having the discussion.
5) So don't destroy hopes or dreams on purpose. They are not your hopes or dreams. You may not agree with them. You may think them unrealistic. Short of harm to the child in question, if the dreams are not interfering with your care, they are not your business. There may come a time when you will have to address directly those unrealistic hopes and dreams. If immediate action is needed, the time may be concurrent with the bad news you have just delivered. If not, the discussion can wait.
6) No one has unlimited time to spend with patients anymore, but allow parents time to react and ask questions. Be prepared ahead of time for the diagnoses that are most common to your area of practice. Be especially prepared to refer parents to local or national groups offering support and guidance. Offer to reschedule an appointment on another day to review their thoughts and what they have learned, and answer questions that will come up.
7) Remember we live in the Internet Age. Parents are going to look up what you tell them, by and large. This is not a reflection on you; stop taking it personally.
8) Be prepared for your own shortcomings and mistakes. We are none of us perfect. We are all human. Practice in talking to parents about sad things only makes the doing of it easier; it doesn't make the sadness of it go away. There isn't any perfect way to deliver sad news. But there are better ways.